FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!

Elvis Trompf

Hello, my name is Elvis. I'm a personal trainer, a university student, and a FARA ambassador hailing from Sydney, Australia.

I was first diagnosed with FA back in October 2019 (I was 26) when it was confirmed with a genetic test but was given the general diagnosis of Ataxia in November of 2017.

Growing up, I had always felt different from the other kids. I was a bit clumsy and uncoordinated, but still a cheerful guy. I always took comments about my symptoms in my stride; until they started to become more pronounced and noticeable, and walking around had started to become increasingly difficult.

Henry Sykes

Education degree(s): I have qualifications in English, Mathematics, ICT, and a BTEC in Motorsport Engineering. I'm very interested in Social Media and provide consultancy for a number of local companies.

Who do you live with? I live with my parents, brother and his girlfriend.

What's a typical day for you? I'm contracted two days a week to assist a local landscaping supplier to help manage their website and online orders and general office work. I then assist other private clients with online advice and support.

March Teen Hangout 2020

Beat your Coronavirus boredom! Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. FARA Ambassador Jean Walsh will lead March's hangout.

Megan Leeper

I live in the north Texas area, and I was diagnosed with FA at 19. I always thought that I was just a little clumsy growing up but found out it was all because of FA. I am currently studying Forensic Psychology online from SNHU and hope to be able to travel globally when I finish my degree.

March FA Hangout 2020

The FARA Ambassador Program presents an FA Hangout talking about: How you stay healthy! Lake and Brittany are leading the discussion. Do you exercise? What do you eat? Let's talk!

When: Tuesday, March 24th and Wednesday, March 25th at 8-9:30 PM EST (Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first-come, first-served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.